Ahead of ASK’s Information Day, we talked to Professor Stephan Eliez, Director of Child Psychiatry and Special Education, OMP
What led you into special needs and to your specialisation in autism (ASD)?
Well, firstly, I have a personal interest as a member of my family has special needs. Professionally, I was always interested in the interaction between genes, neuro-development, learning and psychiatry. As a medical student in the late 80s, I was fascinated by genetics and psychiatry – it was clear to me that genetic research was the future. Could psychiatric disorders be explained by genetics, given that some disorders run in families, for example? At the time, there was little known about genetic mutation and very little research in this area. I went on to study genetics and came across several neuro-psychiatric syndromes. I was particularly fascinated by the case of a young girl with 22q11 DS known to be at risk of schizophrenia even at a young age, and started researching the syndrome here in Switzerland. I realized I did not have the necessary tools and was directed to John Hopkins University in Baltimore, where research was being done on Fragile X Syndrome. I went on to gain a professorship at Stanford, creating the first research programme using neuro-imaging science.
After four years in California, I came back to Geneva, eventually succeeding Professor Manzano as Head of OMP. My first priority was to look at what provision we had in place for children with neuro-developmental disorders and a meeting with a local autism association showed me Geneva was seriously lagging behind compared with what was on offer elsewhere. I was particularly impressed by one facility I visited in Lausanne – the quality and commitment I saw there convinced me we could do much better for our children. I took a group of SEN teachers there, then started to change and develop the programme in Geneva.
Experience and research have shown me just how vital early intervention is in ASD. I brought in Hilary Wood de Wilde six years ago and together we set up the Early Intervention Centre here in Geneva. We’ve been lucky enough to enjoy the support of several Ministers of Education, including the current Minister, Mme Emery-Torracinta, and this has enabled us to expand the structure. It’s still not perfect but we’re getting there. I’ve now created a Foundation which supports the State Clinical Service; this will bolster several projects both in and out of the public arena.
What are your goals, ambitions in the field of autism?
As far as early intervention is concerned, we need to develop screening tests to allow and improve availability. At present only four centres in Switzerland offer this; Geneva, Zurich, Basle and Tessin, and they don’t have the capacity to meet requirements. We know early intervention has a huge impact on improving IQ, as well as allowing children to develop skills which help enormously in social relationships and integration. Out of five severely affected children who were on our programme, four were able to attend mainstream school for several years, which effectively covers the cost of the programme.
We also have to do more in terms of inclusion and there has to be a greater awareness and a stronger momentum in autism research in French-speaking Switzerland. By focusing on research, you raise the competences and quality of resources amongst professionals so that professionals down the line, including those steering institutions and programmes, are more highly educated in the field of SEN and more rooted into developments and progress across the world. In this way, special needs methods penetrate more quickly.
What is your greatest frustration as a specialist in ASD?
There are several – when help and services are available but aren’t used to their full potential or used in the right way. The fact that Switzerland is a very wealthy country but doesn’t always get things together in the support of special educational needs. That there are too few places for adults with profound ASD. We’ve had to keep young adults in our programme because they have nowhere else to go. This then puts a stress on numbers and blocks the access of younger children.
What advice would you give to parents of children with ASD?
Don’t remain alone. I’m convinced that having a child with special educational needs is isolating; it causes anxiety and tension and takes energy. I would advise parents to keep communicating; often there is an unequal sharing of the load and this needs to be recognised and discussed for the dynamics of a couple’s relationship to remain intact.
You’re speaking at Annual Information Day; what will be the topic of your presentation?
I shall be talking about what is available in the field of autism, including the early intervention programme and institutions that are specifically targeted at ASD, with the aim of giving a vision and a guide to parents.